NCT03912129

Brief Summary

Characterization of the genetic causes, and of the immunopathological clinical and biological manifestations in children with pediatric Evans syndrome included in a prospective national observational cohort of rare diseases.

Trial Health

35
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
200

participants targeted

Target at P75+ for not_applicable

Timeline
Completed

Started May 2019

Typical duration for not_applicable

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

April 9, 2019

Completed
2 days until next milestone

First Posted

Study publicly available on registry

April 11, 2019

Completed
25 days until next milestone

Study Start

First participant enrolled

May 6, 2019

Completed
3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

May 6, 2022

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

May 6, 2022

Completed
Last Updated

April 11, 2019

Status Verified

April 1, 2019

Enrollment Period

3 years

First QC Date

April 9, 2019

Last Update Submit

April 9, 2019

Conditions

Keywords

pediatric Evans Syndromegenetic causesimmunophenotyping immunologic explorations

Outcome Measures

Primary Outcomes (2)

  • Number of patients for whom a causal mutation has been identified (known or new)

    after the genetic analyzes carried out on all the participants included, may 2022

  • The number of biological samples collected for PSE children included in the OBS'CEREVANCE cohort and their relatives will be recorded

    every 3 months, between may 2019 and may 2022

Secondary Outcomes (4)

  • Immunopathological clinical manifestations

    after the genetic analyzes carried out on all the participants included, may 2022

  • Abnormalities of lymphocyte immunophenotyping

    after the genetic analyzes carried out on all the participants included, may 2022

  • The correlation between causal mutations identified with the clinical and immunological phenotype

    after the genetic analyzes carried out on all the participants included, may 2022

  • Physiopathological and potentially therapeutic classification of pES-T

    after the genetic analyzes carried out on all the participants included, may 2022

Study Arms (1)

pediatric Evans Syndrome

OTHER

Collection of biological samples of children with pSE included in the the OBS'CEREVANCE cohort and their parents, for genetic and functional immunological analyzes.

Genetic: blood sample

Interventions

A first systematic approach by Targeted-Next Generation Sequencing will be used on the entire cohort of patients with pSE. This step will be performed on a sequencing chip specifically developed to detect anomalies in known genes involved in autoimmunity. In patients for whom no mutations are identified, a whole exome sequencing (WES) approach will be applied to patients and their parents to seek to identify mutations in new genes that may be related to pSE. In patients for whom this WES approach is unsuccessful, the search for somatic lymphocyte mutations, or copy number variants will be performed before considering a complete genome sequencing . If several candidate genes are identified, the clinical data provided by the CEREVANCE and the phenotypic analyses carried out prior to genetic analyses by the CEDI laboratory will guide the choices to prioritize the study of the identified variants.

pediatric Evans Syndrome

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Patient registered in the French national prospective OBS'CEREVANCE cohort
  • Diagnosis of pediatric Evans syndrome (PTI+AHAI)
  • Age strictly under 18 years at the initial onset
  • Child residing in metropolitan France and affiliated to a french health insurance system
  • Free, informed, written and signed consent

You may not qualify if:

  • Evans syndrome secondary to chemotherapy, bone marrow transplantation or organ transplantation.
  • Refusal to participate from parents/patients

Contact the study team to confirm eligibility.

Sponsors & Collaborators

MeSH Terms

Conditions

Evans Syndrome

Interventions

Blood Specimen Collection

Intervention Hierarchy (Ancestors)

Specimen HandlingClinical Laboratory TechniquesDiagnostic Techniques and ProceduresDiagnosisPuncturesSurgical Procedures, OperativeInvestigative Techniques

Central Study Contacts

Study Design

Study Type
interventional
Phase
not applicable
Allocation
NA
Masking
NONE
Purpose
DIAGNOSTIC
Intervention Model
SINGLE GROUP
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

April 9, 2019

First Posted

April 11, 2019

Study Start

May 6, 2019

Primary Completion

May 6, 2022

Study Completion

May 6, 2022

Last Updated

April 11, 2019

Record last verified: 2019-04